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The significance of home-based portable pump chemotherapy for family caregivers to newly diagnosed patients with acute myeloid leukemia: A qualitative thematic analysis

Published:October 01, 2022DOI:https://doi.org/10.1016/j.ejon.2022.102200

      Highlights

      • Home-based chemotherapy requires preparation for the consequences of leukopenia.
      • Home-based chemotherapy decreases the burden of family caregivers.
      • Programmable portable pump chemotherapy eases the acute myeloid leukemia trajectory.
      • The fear of losing the patient overshadows the worries related to the portable pump.

      Abstract

      Objective

      Life as a family caregiver of patients with cancer can be emotionally and practically challenging. Little is known of whether home-based chemotherapy of patients with acute myeloid leukemia places excessive pressure on family caregivers or decreases their burden. To explore the significance of home-based portable pump chemotherapy for family caregivers of patients newly diagnosed with acute myeloid leukemia.

      Methods

      An explorative qualitative design using dyadic and individual semi-structured interviews with family caregivers and patients were followed by thematic analysis. Purposive sampling was used regarding gender, age, and distance to the hospital. At each interview, we were teams of one researcher and one clinical nurse specialist from the hematology department. The derived themes were predominately descriptive, based on patterns in the data.

      Results

      Five couples participated, (aged 39–72 years). Three themes were identified: 1) Going home. 2) Responsibilities due to the pump and leukopenia. 3) The shadow of the life-threatening disease. The pump was a minor concern to the family caregivers seen in the light of the life-threatening disease. Home-based treatment was a relief but the responsibilities due to leukopenia demanded the caregivers' resources.

      Conclusion

      The fear of losing the patient and the burdens of dealing with leukopenia suppressed the family caregivers' sense of load due to the portable pump treatment. The findings underline the importance of healthcare professionals recognizing family caregivers' sense of burden and prioritizing sufficient support and education in order to enhance the everyday life of both patient and family caregiver.

      Keywords

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      References

        • Adams E.
        • Boulton M.
        • Watson E.
        The information needs of partners and family members of cancer patients: a systematic literature review.
        Patient Educ. Counsel. 2009; 77: 179-186https://doi.org/10.1016/j.pec.2009.03.027
        • Aung S.H.H.
        • White K.
        • Bloomfield J.
        The Experiences and the Needs of Caregivers of Patients With Head and Neck Cancer: An Integrative Review.
        Cancer Nurs. 2021; 44: E361-E373https://doi.org/10.1097/NCC.0000000000000833
        • Blindheim K.
        • Thorsnes S.L.
        • Brataas H.V.
        • Dahl B.M.
        The role of next of kin of patients with cancer: learning to navigate unpredictable caregiving situations.
        J. Clin. Nurs. 2013; 22: 681-689https://doi.org/10.1111/j.1365-2702.2012.04349.x
        • Boothroyd L.
        • Lehoux P.
        Home-based chemotherapy for cancer: issues for patients, caregivers, and the health care system.
        Agence d’évaluation des technologies et des modes d’intervention en santé. 2004; (Montreal, Que, 2-550-42584-7): xvi-77
        • Braun V.
        • Clarke V.
        Successful Qualitative Research: A Practical Guide for Beginners.
        first ed. SAGE Publications Ltd, Los Angeles2013
        • Brown T.D.
        • Michael M.
        • Grady D.S.
        Implementation of smart pump technology with home infusion providers: an assessment of clinician workflow and patient satisfaction.
        J. Infus. Nurs. 2018; 41: 344-349https://doi.org/10.1097/NAN.0000000000000302
        • Crisp N.
        • Koop P.M.
        • King K.
        • Duggleby W.
        • Hunter K.F.
        Chemotherapy at home: keeping patients in their “natural habitat.
        Can. Oncol. Nurs. J. 2014; 24: 89-101
        • Eisikovits Z.
        • Koren C.
        Approaches to and outcomes of dyadic interview analysis.
        Qual. Health Res. 2010; 20: 1642-1655https://doi.org/10.1177/1049732310376520
        • Evans J.M.
        • Qiu M.
        • MacKinnon M.
        • Green E.
        • Peterson K.
        • Kaizer L.
        A multi-method review of home-based chemotherapy.
        Eur. J. Cancer Care. 2016; 25: 883-902https://doi.org/10.1111/ecc.12408
        • Francis S.R.
        • Hall E.O.C.
        • Delmar C.
        Spouse Caregivers' Experiences of Suffering in Relation to Care for a Partner With Brain Tumor: A Qualitative Study.
        Cancer Nurs. 2022; 45: E320-E328https://doi.org/10.1097/NCC.0000000000000935
        • Fridthjof K.S.
        • Kampmann P.
        • Dünweber A.
        • Gørløv J.S.
        • Nexø C.
        • Friis L.S.
        • Nørskov K.H.
        • Welinder P.C.
        • Moser C.
        • Kjeldsen L.
        • Møller T.
        Systematic patient involvement for homebased outpatient administration of complex chemotherapy in acute leukemia and lymphoma.
        Br. J. Haematol. 2018; 181: 637-641https://doi.org/10.1111/bjh.15249
        • Girgis A.
        • Lambert S.
        • Johnson C.
        • Waller A.
        • Currow D.
        Physical, psychosocial, relationship, and economic burden of caring for people with cancer: a review.
        J. Oncol. Pract. 2013; 9: 197-202https://doi.org/10.1200/JOP.2012.000690
        • Gorski L.A.
        The impact of home infusion therapies on caregivers.
        Semin. Oncol. Nurs. 2019; 35: 370-373https://doi.org/10.1016/j.soncn.2019.06.010
        • Grover S.
        • Rina K.
        • Malhotra P.
        • Khadwal A.
        Caregiver burden in the patients of acute myeloblastic leukemia.
        Indian J. Hematol. Blood Transfus. 2019; 35: 437-445https://doi.org/10.1007/s12288-018-1048-4
        • Jepsen L.Ø.
        • Friis L.S.
        • Hansen D.G.
        • Marcher C.W.
        • Høybye M.T.
        Living with outpatient management as spouse to intensively treated acute leukemia patients.
        PLoS One. 2019; 14e0216821https://doi.org/10.1371/journal.pone.0216821
        • Logan C.
        • Koura D.
        • Taplitz R.
        Updates in infection risk and management in acute leukemia.
        Hematol. Am. Soc. Hematol. Educ. Program. 2020; 2020: 135-139https://doi.org/10.1182/hematology.2020000098
        • NVK
        (The Danish National Committee on Health Research Ethics [WWW Document]. Dan. Natl. Comm. Health Res. Ethics. URL (accessed 11.12.21))
        • Nygårdh A.
        • Wikby K.
        • Malm D.
        • Ahlstrom G.
        Empowerment in outpatient care for patients with chronic kidney disease - from the family member's perspective.
        BMC Nurs. 2011; 10: 21https://doi.org/10.1186/1472-6955-10-21
        • Oran B.
        • Weisdorf D.J.
        Survival for older patients with acute myeloid leukemia: a population-based study.
        Haematologica. 2012; 97: 1916-1924https://doi.org/10.3324/haematol.2012.066100
        • Patel M.I.
        • Periyakoil V.S.
        • Blayney D.W.
        • Moore D.
        • Nevedal A.
        • Asch S.
        • Milstein A.
        • Coker T.R.
        Redesigning cancer care delivery: views from patients and caregivers.
        J. Oncol. Pract. 2017; 13: e291-e302https://doi.org/10.1200/JOP.2016.017327
        • Patton M.Q.
        Qualitative Research & Evaluation Methods.
        fourth ed. Sage Publications, Inc, 2015
        • QSR
        NVivo Qualitative Data Analysis Software.
        2018
        • Roulston K.
        Reflective Interviewing: A Guide to Theory and Practice.
        first ed. SAGE Publications Ltd, Los Angeles2010
        • Somerville P.
        The social construction of home.
        J. Architect. Plann. Res. 1997; 14: 226-245
        • Streck B.P.
        • Wardell D.W.
        • Derrick J.
        • Wood G.L.
        Physical and Psychological Health Interdependence Among Dyads in Hematological Cancer.
        Cancer Nurs. 2021; 44: E531-E539https://doi.org/10.1097/NCC.0000000000000943
        • Todres L.
        • Keen S.
        • Kerr D.
        Continuous subcutaneous insulin infusion in Type 1 diabetes: patient experiences of ‘living with a machine.
        Diabet. Med. 2010; 27: 1201-1204https://doi.org/10.1111/j.1464-5491.2010.03058.x
        • Tong A.
        • Sainsbury P.
        • Craig J.
        Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.
        Int. J. Qual. Health Care. 2007; 19: 349-357https://doi.org/10.1093/intqhc/mzm042
        • Vaughn J.E.
        • Buckley S.A.
        • Walter R.B.
        Outpatient care of patients with acute myeloid leukemia: benefits, barriers, and future considerations.
        Leuk. Res. 2016; 45: 53-58https://doi.org/10.1016/j.leukres.2016.03.011
        • Waldenmaier D.
        • Zschornack E.
        • Kalt L.
        • Buhr A.
        • Pleus S.
        • Haug C.
        • Freckmann G.
        First user experiences with a novel touchscreen-based insulin pump system in daily life of patients with type 1 diabetes experienced in insulin pump therapy.
        J. Diabetes Sci. Technol. 2019; 13: 96-102https://doi.org/10.1177/1932296818785386
        • Williams A.
        Changing geographies of care: employing the concept of therapeutic landscapes as a framework in examining home space.
        Soc. Sci. Med. 2002; 1982: 141-154https://doi.org/10.1016/s0277-9536(01)00209-x